KuriGohan&Kamehameha
想死不能 - 想活不能
- Nov 23, 2020
- 1,871
On most forums for my illness (CFS), it feels like a constant bombardment of, "Oh, you can barely function? I know it's hard, and there's no hope for a cure, but hang in there and pace yourself!"
I've been ill for now almost 10 years of my life. My teenage years and young adulthood were ruined by the never ending fatigue and physical pain. There were so many opportunities I had to turn down due to illness, and every day I choose to go outside or do anything, it's a constant battle knowing I am guaranteed to be exhausted, in pain, and sometimes even non-verbal. If you are in your 20s and 30s the vast majority of doctors don't offer any pain relief, besides basic NSAIDs and physiotherapy, so you're basically forced to suffer without any hope of even temporary bandaid solutions.
Objectively, this is a terrible existence, for me anyways. In CFS communities, you will see people celebrating being able to go outside without having a crash if they are severe, something so basic and simple that the vast majority of people would take it for granted. Every time I take a step, there's a profound heaviness in my body that others fail to understand. "You're too young- you can't really be sick, it's psychological and born from a mindset of learned helplessness, have you learned about somatization, CBT, and the mind-body connection?" are common phrases said to people with invisible illnesses that aren't fully understood.
It's terribly hard for anyone to understand that your body can keep physically suffering for years and years, without fully shutting down and killing you. Just this constant misery and decline every single day. I can't deny that these experiences have left permanent scars on my mental state, I don't know how it couldn't. Not just from what I've lost as a person, in terms of my own skills and abilities, but the abhorrent treatment from other people. Some of the closest friends I ever had have asked me why I didn't kill myself already, or told me that I could never hope to be loved by anyone in my current state.
Of course, because I am also suffering mentally, every self-proclaimed genius guru out there will purport that this is the true cause, that I just need to seek out more psychological help and I can "train my brain" to be happy with essentially living like a walking dead zombie. Gee, why did I never think about that before? Besides, if I am objectively unhappy being shut up indoors consistently, and I am well aware of that, I am not sure how I can trick myself into feeling content with something which has objectively been proven to be bad for the majority of people's mental state.
There are so many grifters too, especially these e-celeb social media doctors who have built a cult following out of scamming people with conditions like long COVID and CFS which have no sanctioned treatments, and the mechanisms of which are poorly understood. Much like in the mental health sphere, there are so many influencers who can craft these elaborate theories of how or why the disease is occuring, but then it stops there, with no potential recommendations for treatments. Only unfounded (or partially plausible) speculations.
Then, many of them are demanding expensive and exploitative consultation fees from sick, poor, and vulnerable people. Of course, no one does anything about it, because we are objectively invisible. Most people have no idea what CFS is, and if they have heard of it before, only a fraction of those people believe in the legitimacy of such a condition.
It's enough to make you lose faith in humanity, to be talked down to constantly like a crazy and unreliable narrator, because of your physical suffering. Don't even get me started on nonsense terms like "conversion disorders", because at the end of the day it's all just code for, we haven't conducted proper biomedical research into what is causing these disorders, so we assume they are psychological in nature!
I feel like I've become a bitter person, and so disconnected from others, because how could anyone understand my reality? It's a good thing that they don't, in a way, because it means they won't have experienced anything similar to this hell firsthand, but it's an awfully isolating existence.
I genuinely don't know how I'm expected to be happy after I've lived with this awful illness for 10 years, with 0 signs of improvements. Every time I try a new protocol or regimine that someone suggests in the LC or CFS community, I inevitably feel distraught when it does nothing. There's no acknowledgement from others, and no dignity in this kind of suffering. The constant disbelief and lack of care from wider society is crushing, on top of the physical pain and tiredness you are forced to endure everyday.
I want to die so so badly.
I've been ill for now almost 10 years of my life. My teenage years and young adulthood were ruined by the never ending fatigue and physical pain. There were so many opportunities I had to turn down due to illness, and every day I choose to go outside or do anything, it's a constant battle knowing I am guaranteed to be exhausted, in pain, and sometimes even non-verbal. If you are in your 20s and 30s the vast majority of doctors don't offer any pain relief, besides basic NSAIDs and physiotherapy, so you're basically forced to suffer without any hope of even temporary bandaid solutions.
Objectively, this is a terrible existence, for me anyways. In CFS communities, you will see people celebrating being able to go outside without having a crash if they are severe, something so basic and simple that the vast majority of people would take it for granted. Every time I take a step, there's a profound heaviness in my body that others fail to understand. "You're too young- you can't really be sick, it's psychological and born from a mindset of learned helplessness, have you learned about somatization, CBT, and the mind-body connection?" are common phrases said to people with invisible illnesses that aren't fully understood.
It's terribly hard for anyone to understand that your body can keep physically suffering for years and years, without fully shutting down and killing you. Just this constant misery and decline every single day. I can't deny that these experiences have left permanent scars on my mental state, I don't know how it couldn't. Not just from what I've lost as a person, in terms of my own skills and abilities, but the abhorrent treatment from other people. Some of the closest friends I ever had have asked me why I didn't kill myself already, or told me that I could never hope to be loved by anyone in my current state.
Of course, because I am also suffering mentally, every self-proclaimed genius guru out there will purport that this is the true cause, that I just need to seek out more psychological help and I can "train my brain" to be happy with essentially living like a walking dead zombie. Gee, why did I never think about that before? Besides, if I am objectively unhappy being shut up indoors consistently, and I am well aware of that, I am not sure how I can trick myself into feeling content with something which has objectively been proven to be bad for the majority of people's mental state.
There are so many grifters too, especially these e-celeb social media doctors who have built a cult following out of scamming people with conditions like long COVID and CFS which have no sanctioned treatments, and the mechanisms of which are poorly understood. Much like in the mental health sphere, there are so many influencers who can craft these elaborate theories of how or why the disease is occuring, but then it stops there, with no potential recommendations for treatments. Only unfounded (or partially plausible) speculations.
Then, many of them are demanding expensive and exploitative consultation fees from sick, poor, and vulnerable people. Of course, no one does anything about it, because we are objectively invisible. Most people have no idea what CFS is, and if they have heard of it before, only a fraction of those people believe in the legitimacy of such a condition.
It's enough to make you lose faith in humanity, to be talked down to constantly like a crazy and unreliable narrator, because of your physical suffering. Don't even get me started on nonsense terms like "conversion disorders", because at the end of the day it's all just code for, we haven't conducted proper biomedical research into what is causing these disorders, so we assume they are psychological in nature!
I feel like I've become a bitter person, and so disconnected from others, because how could anyone understand my reality? It's a good thing that they don't, in a way, because it means they won't have experienced anything similar to this hell firsthand, but it's an awfully isolating existence.
I genuinely don't know how I'm expected to be happy after I've lived with this awful illness for 10 years, with 0 signs of improvements. Every time I try a new protocol or regimine that someone suggests in the LC or CFS community, I inevitably feel distraught when it does nothing. There's no acknowledgement from others, and no dignity in this kind of suffering. The constant disbelief and lack of care from wider society is crushing, on top of the physical pain and tiredness you are forced to endure everyday.
I want to die so so badly.
